Learning disabilities

Working with carers



Carers can be a valuable source of information for healthcare staff. Family carers in particular will know the patient well, and can sometimes help with communication support and insight into changes in the patient’s health.

However, it is critical that an objective assessment is carried out. What carers can tell you is important, of course, but it is not the only source of information and it is important to gather information directly from the patient.

How carers can be helpful

From the GMC's guidance

'Speak to those close to the patient…about the best ways of communicating with the patient.' (Consent, paragraph 68)

a. A mine of information

A carer who knows the patient well will probably know:

  • the patient's preferred method of communication, for example talking mats or pictures etc  (see Into practice: communication with patients section).
  • the patient's likes and dislikes - knowing these can help you establish trust and build rapport
  • any medication the patient’s taking, their medical history and so on.

Sinead Gillespie, whose son Oliver has Asperger’s Syndrome, wrote a list that was attached to the front of Oliver’s hospital record for years, and which Sinead feels may well have saved Oliver's life.

Sinead describes the list as an early version of a hospital passport (see Into practice: communication with patients section). It was intended to help healthcare workers who looked after Oliver when he was in hospital to communicate with him, and contained:

  • words to use and words not to use
  • ways to ask questions that would elicit clear responses.

You can read more about Oliver in Patient perspectives: case study stories.

b. Remembering the details

As well as helping the patient understand what the doctor is saying throughout the consultation, carers can help by remembering what information the doctor has given the patient - the options for treatment for example - and is able to explain it again to the patient later, if necessary. 

c. Knowing how the patient usually behaves

Carers who know the patient well will be able to tell you how they usually behave, and so help you judge how they are affected by their current condition.  

For example, in Wood for the trees, Heather explains to the doctor that it’s unusual for Marie to have no appetite: 'She usually loves her food but she won’t even be tempted by a cup of tea and a bourbon!’

Dr Pepera describes an occasion, in the video below, when making an assumption about a patient's usual behaviour could have resulted in failure to diagnose a serious condition.

Check how the patient is when well

Dr Pepera describes a case which demonstrates one of the benefits a carer can bring to the consultation: knowledge of how the patient is when well.

Download the transcript (PDF)

How carers may sometimes be unhelpful

a. Answering for the patient

Some carers – like Dr Pepera (see video below) can answer for the patient instead of letting the patient answer the doctor themselves.  They may do this even when you are speaking to the patient directly – it’s often a habit developed over time that is especially common with parent carers of people with learning disabilities. 

Marie’s sister Heather in Wood for the trees doesn’t exactly answer for Marie but she does interrupt the doctor’s conversation with her sister. It’s suggested in Interactive learning that this might be because Heather is nervous and anxious, as is often likely to be the case in real-life consultations. 

In these circumstances, if you’re able to reassure the carer, deal with their concerns, then the consultation is likely to be much more successful. Have a look at Into practice: working with carers for some tips on how to handle problem situations.

When carers aren't helpful

Dr Pepera – a family carer herself – considers how carers might not always be as helpful as they intend.

b. Passing on assumptions, not facts

'[Carers] may be making assumptions and passing those assumptions on to you.'

Dr Matt Hoghton

Another factor to consider is how well the carer knows the patient. Sometimes people with learning disabilities will be supported by paid carers, perhaps employed by support organisations or care homes. These carers may have worked with the person for a long time and may have got to know them well. But it is also possible that staff turnover or sickness absence will mean that a paid carer may not know the person well.

It’s really important that you make your own objective assessment of the patient’s condition and also their capacity. 

Always carry out an examination if necessary – don’t avoid it because it may be difficult persuading the patient to comply, or because the carer feels it isn’t necessary. If you explain why you’d like to carry out the examination, the carer may even be able to help you with this by keeping the patient calm.

Recognising carers' limitations

Dr Matthew Hoghton gives some examples of instances where a carer's presence might not be helpful during a consultation.

Download the transcript (PDF)